Whaaaat?! Obviously it’s been awhile since we’ve written anything for many reasons. Like we’re crazy-busy. We have 2 kids now. Eli’s had some health issues and started preschool. And, you know, life and stuff.
Since we’ve last updated, we had a baby boy, named Isaac Samuel Aquila. He’s just awesome. He’s a chunky tub of fun and is perfectly healthy. We couldn’t be more in love. Isaac is obsessed with Eli, who is warming up to being a big brother.
At the end of January and beginning of February, Eli had some scary health stuff going on. He’d been fighting continual sinus infections since September, requiring 5 rounds of antibiotics. Unfortunately he was unable to fight off the infections, resulting in some fever spikes, which caused seizures. Eli had quite a lot of drop (or atonic) seizures followed by a three minute myoclonic seizure, causing us to call 911. After a few hours in the ER, we were admitted to the Peds floor for testing and observation. Later that week we were discharged with new seizure meds and a new normal, only to return to the hospital via ambulance a few day later, after 22 drop seizures in 15 minutes. His oxygen levels kept going into Destat (dropping without being able to return to normal levels independently), raising more concern. After lots of doctor consults and a complete lack of sleep, it was determined that Eli had obstructed sleep apnea caused by enlarged tonsils and adenoids. While we visited the idea of removing these bad boys in early January, the ENT wanted to wait until Eli was healthy, but as it turns out, the tonsils and adenoids were a big part of Eli’s health issues since they decreased the mucus draining (just gross), causing the sinus infections, which caused the fevers, which brought on the seizures. 😳
Still with me?! Luckily Eli was able to have his tonsils and adenoids removed. He hasn’t had a seizure or fever since. And other than a cold (thanks preschool 😜), he’s been on the mend.
What’s weird for me (and likely for J) is that in the heat of it all, I can hang. I’m able to put most of my emotions and my junk aside so I can do whatever it takes to do what is best for Eli. I communicate easily with the medical team, advocate to the point of obnoxiousness for E, and be completely present and functional on little to no sleep. Whatever it takes to make him healthy again – to bring back my sweet, happy boy. For me, when everything slows down and we resume whatever our current normal is, I have to actually deal with the stress and emotions of everything, and if I’m honest, I hate that. I’d rather lock the emotional hard stuff away and carry on with regular life. But that doesn’t ever work, does it? Angelman Syndrome can be tough on a daily basis. Don’t get me wrong, I absolutely love my son, but our life isn’t always easy. It’s difficult to relate to others, or have people identify with our situation. We are exhausted. There are struggles and insane fears that constantly loom. However, there is also a constant presence of God. He shows up in amazing and unexpected ways. We know we aren’t alone in the wilderness. He has not forgotten or abandoned us. And, most reassuring of all, He trusts us to do this specific work.
God is good, friends. All the time.